I always knew having two kids would be harder than one. Everything has to be doubled – twice the feeds, twice the nappies, twice the baths... Some days it seems all I do is feed, change, feed, change, feed, change – sleep! Some days pass in a blur, with appointments and therapies having to be completed. Some days never seem to end and some pass by uneventfully.
I have watched others with multiple kids, so I knew what to expect and I knew it could be done. But then, my kids were different. Things take longer. Things are harder.
I can’t leave a piece of toast in front of Dexter at breakfast knowing that he will eat it – I have to feed him – every meal. I can’t sit a cup of water down, knowing he will drink it throughout the day – I have to do this for him – all day. I can’t just sit him down on the ground to watch tv – I have to sit with him, to ensure he has support around his trunk.
If we go for a drive somewhere, it takes me at least three trips to the car. This is one of the hardest things at the moment for me. It’s like I have twins, but one who weighs twice as much as the other and can’t hold on and sometimes can’t hold their head up and is totally reliant on me for everything.
For me to go grocery shopping, I have to have my husband with me. Dexter is too big for the baby seats in the trolleys and the toddler seat is too low, meaning he falls backwards. So if I do need to go to the shops on my own, it’s only for small things that fit in the basket – and I have to make sure it doesn’t get overloaded – the pram is heavy and difficult to push one handed.
I live about a minutes’ walk to the beach and yet, I can’t go there on my own with the two kids. The pram would never work on the sand and I can’t exactly carry one down and then go and get the other....
I get sad when we go to the park. I get sad when others complain about insignificant little things. I get sad when I have to take Dexter to the hospital. I get sad if I have missed doing some of his therapies in a day. I get sad a lot....
And then I get cranky. I get cranky that people can’t enjoy the small things. I get cranky when people try and compete. I get cranky when people stare and judge and pity.
And I get cranky that people see my sad days as being something other then what they are. I've had a tough two years. Things didn’t turn out like I thought they would. I'm entitled to get sad every now and then!
Despite what people think and assume, I'm not depressed and I'm certainly not sick. I know when I'm having a bad day and can admit it. I cry. I talk to people about it – I'm a lot more open now about everything then I was when this journey first started. And I hug my kids so tight they squirm away.
I've learnt to appreciate every day and every small little achievement. This morning, Dexter drank from a cup and didn’t spit it out and he has been standing in his frame for close to an hour and I haven’t had to go and push his head forward once. These are two massive things for us.
Our life is tough, but it’s filled with much love and support and to those people, I am eternally grateful. And I'm thankful for having a determined little boy, who is developing and getting stronger every day and who shows us that we are to never give up – despite what some people think!